Use of two surveillance methods to estimate the need for transition between child and adult mental health services in young people with ADHD in the UK

Home | Use of two surveillance methods to estimate the need for transition between child and adult mental health services in young people with ADHD in the UK

9 Aug 2019

Eke H et al. BMC Med Res Methodol 2019; 19: 179

The transition from child and adolescent (CAMHS) to adult mental health services (AMHS) is reported to be particularly challenging for adolescents with ADHD, with differences in the structure, availability and costs, and variations in the age boundary at which a patient is considered an ‘adult’ all reported to be barriers to a seamless transition into AMHS (Singh et al. 2005; Singh et al. 2008). Population-based studies suggest that approximately 15% of childhood ADHD cases meet full diagnostic criteria for ADHD in adulthood, with as many as ~40–60% of cases meeting criteria for ADHD in partial remission at age 25 (Faraone et al. 2006). Therefore, a smooth transition process from CAMHS to AMHS is essential for effective long-term management of ADHD. As part of a larger National Institute for Health Research (NIHR)-funded project, this study aimed to assess the need for transition between CAMHS and AMHS in individuals with ADHD at a national level in the UK using two different methodologies: the Child and Adolescent Psychiatry Surveillance System (CAPSS*; a surveillance methodology) and the Maudsley Biomedical Research Centre’s Clinical Records Interactive Search (CRIS; an electronic case note review methodology at the South London and Maudsley [SLaM] NHS trust).

The CAPSS surveillance study collected data on the incidence of transition between services over a period of 13 months, from November 2015 to November 2016. The first month was a pilot month,† and subsequently, surveillance reporting cards were sent to consultant child and adolescent psychiatrists each month, with a total of 7016 reporting cards sent over the 12-month study period. The follow-up period ran from August 2016 to August 2017, with a 9-month follow-up for each reported case. The following case definition criteria‡ had to be met for a reported case to be eligible for inclusion in the surveillance study:

A young person with a clinical ADHD diagnosis, currently under the care of CAMHS, who is reviewed for the first time when they are within 6 months of that CAMHS’s age boundary.

The reporting consultant considers that the young person will require continued pharmacological treatment for their ADHD symptoms after crossing their CAMHS’s age boundary.

The young person has not been previously reported to the CAPSS in relation to the current study.

If the young person has comorbid diagnoses, including learning or developmental disabilities, they should only be reported to the CAPSS if it is their ADHD, rather than any comorbid disorder, for which ongoing treatment is required.

A baseline notification questionnaire was sent to all clinicians§ who reported a case to confirm case eligibility, collect sufficient data to eliminate duplicate reports, and to collect information on the patient’s treatment and planned transition details. A 9-month follow-up questionnaire was sent to the same reporting clinician to ascertain the outcome and confirm the details of the transition.

Data from the SLaM CRIS system were used over the same time period as the surveillance study, and the same case definition criteria were operationalised into a structure query language to enable identification of cases in CRIS, which were output as anonymised electronic patient records. Two researchers manually reviewed the records and extracted demographic-, clinical- and service-related characteristics as well as any available transition details.

Descriptive data|| were collected from both the CAPSS and CRIS systems, tabulated and directly compared. For this report, only CAPSS cases reported within the boundary of London (n = 45) were included in the analysis, to allow more direct comparison of the CAPSS methodology with the CRIS case note review methodology, which was localised to the SLaM trust.

The study findings were as follows:

There was a 53% response rate to the CAPSS monthly reporting cards sent to child and adolescent psychiatrists, which was lower than response rates reported in previous CAPSS studies.

There were 300 CAPSS case notifications in total, which was higher than the number of transitions expected based on previous transition studies.

The response rate to the CAPSS baseline questionnaire was 58%, and to the follow-up questionnaire was 83%, slightly lower than response rates reported in previous CAPSS studies.

127 (42%) questionnaires were not returned, 1 was returned blank, and 39 (13%) were returned with missing data. The sections regarding transition facts were most frequently left blank in the baseline questionnaire, while sections about details of optimal transition were most commonly left blank in the follow-up questionnaire.

There was some confusion about the case definition among clinicians responding to CAPSS, specifically around the criterion “reviewed for the first time when within 6 months of the age boundary”; some clinicians incorrectly interpreted this as referring to the first time they had ever reviewed the patient, rather than the first time they had reviewed the patient within the surveillance period. Most errors arising from this confusion occurred during the pilot month, and these data were excluded from the analysis, per protocol.

Variation was seen between the data collected from CAPSS vs CRIS; CAPSS identified 45 potential cases within the specified boundary of London, 18 of which met the case definition criteria for eligibility. In contrast, the CRIS database identified 91 ADHD cases meeting eligibility criteria within the SLaM NHS Trust; however, the case notes confirmed that 15 of these had been discharged prior to transition or no longer required treatment, leaving a total of 76 eligible cases. The lower rate of CAPSS case reporting may indicate a lack of awareness of CAPSS among consultants.

All CAPSS cases were reported by a consultant-level clinician, whereas only half (n = 41; 54%) of the CRIS-identified cases had been reviewed by a consultant, suggesting that ADHD patients in the SLaM trust are frequently seen by other health professionals, e.g. junior doctors or specialist nurses, or alternatively by locum consultants who may not be registered with CAPSS.

The reported number of referrals made and first appointments offered was 10 for CAPSS and 37 for CRIS; the corresponding number of cases confirmed to have attended their first appointment was 4 and 28, respectively.

There were some limitations to this study; whereas the clinicians completing the CAPSS surveillance questionnaires had direct knowledge of the young people they reviewed, the data collected using CRIS relied on details recorded in case notes by other people. Additionally, the CAPSS surveillance questionnaires were designed to collect concise responses, whereas extraction of the same succinct information was not always possible from review of the CRIS case report notes. Also, whereas CAPSS can provide data on a national scale, the case notes in the CRIS system were limited to a single London-based NHS trust, meaning that the results obtained from CRIS may not be generalisable to young people with ADHD and the transition process in the wider UK population. Furthermore, although only CAPSS data collected from consultants in London were analysed in this study, it was not possible to directly replicate the geographical location of the SLaM clinics reporting to CRIS, because the address provided from the CAPSS surveillance notifications was that of the clinician, rather than the clinic/hospital where the patient was reviewed. SLaM is one of eight CAMHS-providing trusts in London, and therefore the data collected in CRIS may represent only a fraction of the ADHD transition cases in London, with the CAPSS data covering a much wider geographical boundary, further limiting the generalisability of these results.

The authors concluded that the combination of both the CAPSS and CRIS surveillance methodologies provided insight into the process of transition between child and adult services for young people with ADHD at a national level. They highlighted that each of the methods offered individual strengths and weaknesses, and that both systems need to be funded and supported in order to facilitate future large-scale national studies. The authors suggested that further work is required in order to refine these methodologies so that more robust estimates can be made in the future.

*The CAPSS is a coordinated data collection system designed to collect notification reports from consultant child and adolescent psychiatrists, enabling researchers to collate data about each patient from these clinicians, also allowing longer-term follow-up so that patient outcomes and the management of a condition can be assessed. Relevant ethical approval was obtained prior to data collection†The first month of any surveillance study is considered a pilot, allowing investigators to detect and resolve any difficulties, for example ambiguities in case definitions. Additionally, prior experience in surveillance studies indicates that prevalent cases are often reported due to interest about the study, such that, in this study, there were concerns that the public health relevance of successful transfer of young people with ADHD between services may result in a large number of cases being reported which could have overloaded the system‡The case definition for this surveillance study differed from usual surveillance criteria, since, to the authors knowledge, this was the first study to utilise a surveillance case definition that described a health service process rather than a health condition defined by clinical symptoms. Additionally, the present case definition needed to be appropriate for both psychiatrists and paediatricians, to ensure that both sets of clinicians would identify and report on the same transition process. Since different services utilise different age boundaries, an age boundary was not included in the case definition§Any healthcare professional with access to the patient’s notes could complete the questionnaires on behalf of the patient’s consultant child and adolescent psychiatrist, but the baseline notification and reporting cards were only sent to the consultant||The following descriptive data were collected from both the CAPSS and CRIS systems: number of cases identified; gender; ethnicity; reviewing clinician; transition referral date; referral acceptance; first appointment in AMHS; evidence of joint meetings; and persons involved in the transition

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